Washington D.C. – August 11, 2026 – In a landmark legislative achievement, the U.S. Senate unanimously passed the National Plan for Epilepsy Act (S. 494) on August 4, 2026, marking a pivotal moment in the nation’s commitment to addressing the complex challenges posed by epilepsy. Epilepsy Alliance America (EAA) hailed the unanimous vote as a historic stride toward establishing a cohesive, federally coordinated strategy aimed at revolutionizing epilepsy care, accelerating research breakthroughs, significantly reducing epilepsy-related deaths, and profoundly enhancing the quality of life for the millions of Americans living with this chronic neurological condition.
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The bill’s passage through the Senate is the culmination of years of tireless advocacy, a testament to the unwavering dedication of individuals living with epilepsy, their families, caregivers, healthcare professionals, researchers, and a diverse coalition of epilepsy organizations nationwide. This collective voice has successfully brought the urgent needs of the epilepsy community to the forefront of national policy discourse, demonstrating the power of grassroots movements in shaping legislative priorities.
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The legislation, which received a critical boost from the Senate Health, Education, Labor and Pensions (HELP) Committee’s approval of a strengthened Manager’s Amendment on July 22, mandates a comprehensive review of existing federal epilepsy programs. This review will serve to identify critical gaps in services and patient outcomes, subsequently informing the development of actionable recommendations to address unmet needs across the spectrum of epilepsy care. The proposed National Plan is designed to be multi-faceted, concentrating on vital areas including advanced research, improved diagnosis protocols, innovative treatment modalities, public awareness campaigns, targeted mortality prevention strategies, and holistic enhancements to quality of life. Crucially, the framework ensures continuous input from those with lived experience, healthcare providers, researchers, advocates, and relevant federal agencies, embedding patient-centricity at its core.
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Epilepsy Alliance America, a leading advocacy group, has expressed profound gratitude to Senators Eric Schmitt (R-MO) and Amy Klobuchar (D-MN) for their exemplary bipartisan leadership. Their collaborative efforts were instrumental in shepherding the bill through the legislative process, underscoring a shared commitment to improving the lives of individuals and families affected by epilepsy. The unanimous Senate support for S. 494 resonates with a growing national understanding that epilepsy, far from being an isolated medical condition, necessitates a unified and coordinated federal response.
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"The Senate’s unanimous support demonstrates a growing recognition that epilepsy deserves a coordinated national response," stated Liza Gundell, Board Chair of Epilepsy Alliance America. "For too many individuals and families, epilepsy brings challenges that extend far beyond seizures, including barriers to care, debilitating stigma, significant financial burdens, and profound concerns about safety and overall quality of life. A National Plan for Epilepsy will help ensure that these challenges are addressed through a thoughtful, comprehensive, and collaborative strategy."
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The focus now shifts to the House of Representatives, where Epilepsy Alliance America is actively collaborating with congressional champions, including Representatives Jim Costa (D-CA-21) and Greg Murphy, M.D. (R-NC-3), to build robust support and secure the bill’s passage before the close of the current legislative year. The momentum is palpable, yet the call for continued advocacy remains urgent to ensure this transformative vision becomes a federal mandate.
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Main Facts
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The U.S. Senate, on August 4, 2026, unanimously passed the National Plan for Epilepsy Act (S. 494), a bipartisan bill aimed at establishing a coordinated national strategy for epilepsy. This legislation seeks to improve patient care, foster research, reduce epilepsy-related mortality, and enhance the quality of life for millions of Americans living with epilepsy. The bill’s core mandate involves a federal review of existing epilepsy programs to identify and address service gaps, focusing on research, diagnosis, treatment, awareness, mortality prevention, and quality of life. The unanimous vote underscores a broad bipartisan consensus on the need for a comprehensive national approach to epilepsy. Key figures like Senators Eric Schmitt and Amy Klobuchar were praised for their leadership, while Epilepsy Alliance America (EAA) leadership, including Liza Gundell, Lisa Gallipoli, and Amanda Mitchell, highlighted the profound impact of this legislative step. The bill now moves to the House of Representatives, where advocacy efforts are intensifying to secure its passage before the end of the year.
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Chronology of a Coordinated Effort
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The journey of the National Plan for Epilepsy Act to the precipice of becoming law is a narrative of sustained advocacy and strategic legislative maneuvering, stretching back years before its recent Senate triumph.
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Years of Dedicated Advocacy (Pre-2026): The roots of S. 494 extend deep into the epilepsy community. For decades, individuals living with epilepsy, their families, and a vast network of patient organizations have been vocal about the fragmented nature of epilepsy care and research in the United States. This period saw countless awareness campaigns, congressional visits, public testimonies, and the dissemination of critical data highlighting the unmet needs of the community. These efforts laid the groundwork, educating policymakers about the prevalence, impact, and specific challenges associated with epilepsy. A significant milestone in this preparatory phase was the drafting of "The Epilepsy Community Consensus Priorities" earlier in 2026, a collaborative effort by organizations like Epilepsy Alliance America and key stakeholders, which outlined the foundational principles and objectives that would ultimately inform the legislative text of S. 494. This consensus document served as a powerful blueprint for what a comprehensive national plan should encompass.
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July 22, 2026 – Senate HELP Committee Approval: A critical hurdle was cleared when the Senate Health, Education, Labor and Pensions (HELP) Committee convened to consider S. 494. During this session, the committee approved a crucial Manager’s Amendment. This amendment was pivotal, as it not only preserved the fundamental purpose and intent of the original bill but also strengthened its overall framework. This process often involves refining language, incorporating feedback from various stakeholders, and ensuring the bill is robust enough to achieve its stated goals. The committee’s approval signaled a strong bipartisan endorsement within a key legislative body, setting the stage for a full Senate vote.
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August 4, 2026 – Unanimous Senate Passage: The culmination of these efforts arrived on August 4, 2026, when the National Plan for Epilepsy Act (S. 494) was brought to the floor of the U.S. Senate. In a resounding display of bipartisan unity and recognition of the bill’s importance, it passed unanimously. This rare level of consensus in contemporary American politics underscored the compelling case made by advocates and the undeniable need for a national strategy. The unanimous vote sent a powerful message of commitment from the legislative branch to the millions affected by epilepsy.
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August 11, 2026 – Epilepsy Alliance America’s Official Announcement: Following the Senate’s passage, Epilepsy Alliance America officially announced the historic milestone. This announcement served to inform the public, celebrate the achievement, and, crucially, to galvanize continued support for the next phase of the legislative process. The organization used this moment to acknowledge the countless individuals who contributed to the bill’s progress and to reiterate the urgent need for its final enactment.
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The Path Forward – House Consideration (Remaining 2026): With Senate approval secured, the focus immediately shifts to the House of Representatives. Epilepsy Alliance America and its partners are now intensifying their advocacy efforts to ensure that a companion bill or the Senate-passed version of S. 494 is taken up, supported, and ultimately passed by the House before the end of the current Congressional term. This period will involve extensive lobbying, public awareness campaigns, and direct engagement with House members, mirroring the successful strategies employed in the Senate. The goal is to see the National Plan for Epilepsy Act signed into law, transforming the vision into tangible federal policy.
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Supporting Data: The Urgent Need for a National Plan
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The National Plan for Epilepsy Act is not merely a bureaucratic exercise; it is a critical response to the profound and often overlooked challenges faced by a significant portion of the American population. The supporting data paints a stark picture of the prevalence, economic burden, mortality rates, and quality-of-life impacts of epilepsy, underscoring the absolute necessity of a coordinated national strategy.
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Prevalence and Incidence:nEpilepsy is one of the most common neurological conditions globally, affecting people of all ages. In the United States, it is estimated that approximately 3.4 million adults and nearly half a million children live with active epilepsy. This means that roughly 1 in 26 people will develop epilepsy at some point in their lifetime. Each year, about 150,000 new cases are diagnosed, with higher incidence rates observed in young children and older adults. The sheer number of individuals affected highlights the scale of the public health challenge and the broad societal impact.
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Economic Burden:nThe financial toll of epilepsy on individuals, families, and the healthcare system is substantial. Direct medical costs, including hospitalizations, emergency room visits, physician services, diagnostic tests, and antiepileptic medications, run into billions of dollars annually. Indirect costs, which are often far greater, encompass lost productivity due to seizures, unemployment or underemployment, caregiver burden, and disability payments. Studies have estimated the total annual economic burden of epilepsy in the U.S. to be in the tens of billions of dollars, making it one of the most costly neurological disorders. These figures do not even fully capture the non-monetary costs such as emotional distress, social isolation, and reduced quality of life.
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Mortality Rates and SUDEP:nEpilepsy is not only a chronic condition but also one that carries a significant risk of premature mortality. People with epilepsy have a two to three times higher risk of premature death compared to the general population. A particularly devastating aspect is Sudden Unexpected Death in Epilepsy (SUDEP), which is the leading cause of death in people with uncontrolled seizures and is estimated to affect approximately 1 in 1,000 adults and 1 in 4,500 children with epilepsy each year. Many of these deaths are potentially preventable through better seizure control, increased awareness among patients and healthcare providers, and enhanced monitoring. The current fragmented approach to care often means that SUDEP risks are not adequately discussed or mitigated, a critical gap the National Plan aims to address.
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Quality of Life and Comorbidities:nBeyond the physical manifestations of seizures, epilepsy significantly impacts an individual’s quality of life. Stigma remains a pervasive issue, leading to social isolation, discrimination in employment and education, and psychological distress. Individuals with epilepsy often face limitations in driving, certain recreational activities, and independent living. Furthermore, epilepsy is frequently accompanied by a range of comorbidities, including depression, anxiety, migraine, learning disabilities, and cognitive impairment. These co-occurring conditions can be more debilitating than the seizures themselves and often go undiagnosed or inadequately treated under the current system. The lack of coordinated care often means that mental health support, vocational rehabilitation, and social services are not seamlessly integrated into treatment plans.
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Gaps in Current Services and Outcomes:nDespite advancements in medical science, significant disparities and gaps exist in epilepsy care:
- Access to Specialized Care: Many individuals, particularly in rural or underserved areas, lack access to neurologists specializing in epilepsy (epileptologists) or comprehensive epilepsy centers.
- Diagnosis Delays: Misdiagnosis or delays in diagnosis are common, leading to prolonged suffering and potentially irreversible neurological damage.
- Treatment Refractory Epilepsy: Approximately one-third of individuals with epilepsy do not achieve seizure control with current medications, yet access to advanced treatments like epilepsy surgery, vagus nerve stimulation, or dietary therapies remains inconsistent.
- Public Awareness and Education: A widespread lack of public understanding about epilepsy contributes to stigma and hinders appropriate first-aid response during seizures.
- Data Collection and Research Funding: Research into the causes, prevention, and cure of epilepsy, while progressing, remains underfunded relative to its prevalence and impact. Comprehensive national data on epilepsy outcomes, treatment efficacy, and disparities is often lacking, making evidence-based policy difficult.
- Mortality Prevention: Specific strategies for SUDEP prevention and education are not uniformly implemented across healthcare systems.
The National Plan for Epilepsy Act directly confronts these challenges by proposing a federal framework to identify these gaps, develop evidence-based recommendations, and coordinate resources to ensure that every American with epilepsy has access to the best possible care, support, and opportunities for a full life. It represents a proactive, rather than reactive, approach to a chronic condition that has long been relegated to the periphery of national health priorities.
Official Responses: Voices of Hope and Continued Commitment
The unanimous passage of the National Plan for Epilepsy Act in the Senate ignited a wave of optimism and reinforced the resolve of advocacy leaders, legislative champions, and individuals with lived experience. Their responses underscore the profound significance of this legislative milestone and the unwavering commitment required to see it fully realized.
Liza Gundell, Board Chair of Epilepsy Alliance America, articulated the community’s gratitude and the broader implications of the Senate’s decision. "We are grateful to Senators Eric Schmitt and Amy Klobuchar for their bipartisan leadership and commitment to improving the lives of people affected by epilepsy," Gundell stated, acknowledging the critical role of political will in advancing such complex legislation. Her emphasis on the "growing recognition that epilepsy deserves a coordinated national response" highlights a crucial shift in how the condition is perceived at a policy level. Gundell further elaborated on the multifaceted challenges faced by those with epilepsy, moving beyond the clinical aspect of seizures to encompass "barriers to care, stigma, financial burdens, and concerns about safety and quality of life." Her vision for the National Plan is clear: "A National Plan for Epilepsy will help ensure that these challenges are addressed through a thoughtful, comprehensive, and collaborative strategy." This statement encapsulates the holistic and integrated approach the bill aims to foster, moving away from fragmented care towards a patient-centric ecosystem.
Lisa Gallipoli, Executive Director of Epilepsy Alliance America, while celebrating the Senate’s achievement, immediately pivoted to the next crucial phase. "The passage by the Senate of the National Plan for Epilepsy is a great achievement; but our work is not done!," Gallipoli emphatically declared. Her statement serves as a powerful call to action, reminding the community that legislative success is a multi-stage process. She expressed immense pride in the collective advocacy efforts: "Epilepsy Alliance America is proud to be part of the greater epilepsy community, speaking and acting in one shared voice, about the National Plan for Epilepsy." This sentiment reinforces the idea that the bill’s progress is a testament to the unified strength of the epilepsy community. Gallipoli’s immediate focus is clear: "We will continue to mobilize our network to ensure that the House of Representatives follows the lead of the Senate before the end of the Congressional term." This commitment highlights the strategic understanding that momentum must be maintained and leveraged to achieve final enactment.
The personal resonance of this legislative push was powerfully articulated by Amanda Mitchell, MPH, an Epilepsy Alliance America Board member and a member of the National Plan for Epilepsy Committee. As the parent of a child with epilepsy, Mitchell’s advocacy is deeply personal, lending authentic weight to her perspective. "As the parent of a child with epilepsy, advocating for the National Plan for Epilepsy is deeply personal to me," she shared. "I know just how desperately our community needs the investments in comprehensive research, effective treatments, improved access to care, and increased support." Her statement directly links the bill’s provisions to the tangible needs of families grappling with the daily realities of epilepsy. Mitchell reflected on the journey, stating, "It has been a privilege to add my voice to those in the epilepsy community who have pushed for this change for many years." Her forward-looking commitment is equally strong: "I look forward to continuing to support this work until the plan is enacted into law, and we see its benefits for the millions of Americans living with epilepsy." Mitchell’s words embody the enduring hope and determination of those who stand to benefit most directly from the National Plan.
Beyond the advocacy organizations, the bipartisan leadership in the Senate was crucial. Senators Eric Schmitt and Amy Klobuchar’s collaboration demonstrated that addressing public health challenges can transcend political divides. Their commitment to improving the lives of people affected by epilepsy provided the necessary legislative stewardship, turning years of advocacy into tangible legislative progress. Their willingness to work across the aisle on an issue of such widespread impact set a powerful example for the remainder of the legislative process.
The inclusion of Representatives Jim Costa (D-CA-21) and Greg Murphy, M.D. (R-NC-3) as champions in the House signals a strong bipartisan foundation for the bill’s next phase. Their engagement will be vital in mobilizing support, navigating committee processes, and ultimately bringing the National Plan for Epilepsy Act to a successful vote in the House, echoing the unanimous success achieved in the Senate. These official responses collectively paint a picture of gratitude for past achievements, an urgent awareness of the work remaining, and an unshakeable resolve to ensure that the National Plan for Epilepsy becomes a reality.
Implications: A New Dawn for the Epilepsy Community
The unanimous Senate passage of the National Plan for Epilepsy Act (S. 494) carries profound implications, signaling a transformative shift in the national approach to a condition that has long been underserved and often misunderstood. If enacted, this legislation promises to usher in a new era of care, research, and support for millions of Americans.
A New Era for Epilepsy Care and Research
The most immediate and significant implication of the National Plan for Epilepsy is the establishment of a federally coordinated strategy. This will move beyond the current fragmented landscape, which often leaves patients and providers navigating a complex and inconsistent patchwork of resources.
- Accelerated Research and Innovation: The plan’s focus on research is poised to significantly increase funding and coordination for studies into the causes, prevention, and cure of epilepsy. This could lead to breakthroughs in understanding underlying mechanisms, developing more effective and personalized treatments, and ultimately finding a cure. Enhanced data collection and surveillance, as mandated by the bill, will also provide invaluable insights to guide future research priorities and measure the impact of interventions.
- Improved Diagnosis and Treatment: By identifying gaps in services, the plan will pave the way for standardized best practices in diagnosis, reducing misdiagnoses and delays. It will also work to improve access to comprehensive epilepsy centers, specialized neurologists, and advanced treatment options, ensuring that individuals with refractory epilepsy have access to potentially life-changing interventions like surgery or neurostimulation.
- Enhanced Public Awareness and Stigma Reduction: A coordinated national strategy will facilitate large-scale public awareness campaigns. These campaigns are crucial for educating the public about epilepsy, dispelling myths, and reducing the pervasive stigma that often accompanies the condition. Increased awareness can lead to earlier recognition of symptoms, appropriate first-aid response during seizures, and a more inclusive societal environment for people with epilepsy.
- Targeted Mortality Prevention: The plan’s emphasis on mortality prevention, particularly concerning SUDEP, is a critical step. This will likely lead to standardized patient education about SUDEP risks, improved monitoring technologies, and research into biomarkers that could predict risk, ultimately saving lives.
Empowering the Epilepsy Community
Beyond clinical improvements, the National Plan has the potential to profoundly empower individuals with epilepsy and their families, addressing the broader social and quality-of-life challenges.
- Valuing Lived Experience: The bill’s framework explicitly ensures "ongoing input from people with lived experience." This institutionalizes the patient voice in policy-making, ensuring that strategies are truly patient-centric and reflect the real-world challenges and priorities of those living with epilepsy. This is a significant shift towards more inclusive and effective health policy development.
- Addressing Holistic Needs: The plan’s focus on quality of life extends beyond seizure control to encompass mental health, social support, and vocational rehabilitation. By identifying gaps in these areas, the federal government can coordinate resources to provide better access to mental health counseling, employment support, and programs that foster independence and community integration, thereby tackling the "challenges that extend far beyond seizures."
- Reducing Financial and Social Burdens: By improving access to care and reducing complications, the plan could indirectly alleviate some of the significant financial burdens associated with epilepsy. Furthermore, reduced stigma and improved public understanding can open doors to better employment opportunities, educational attainment, and overall social inclusion.
Setting a Precedent for Chronic Disease Management
The National Plan for Epilepsy Act could also serve as a model for addressing other chronic neurological or rare diseases, demonstrating the efficacy of a comprehensive, coordinated federal approach.
- Blueprint for Integrated Care: The emphasis on reviewing existing programs, identifying gaps, and developing recommendations provides a robust blueprint for how the federal government can effectively manage and improve care for other complex conditions that currently suffer from fragmented services and inconsistent outcomes.
- Leveraging Bipartisan Consensus: The unanimous Senate passage sends a powerful message that public health issues, when framed effectively and supported by compelling data and grassroots advocacy, can achieve rare bipartisan consensus, even in a politically divided landscape. This could inspire similar legislative efforts for other conditions.
The Path Ahead: House Consideration and Beyond
While the Senate’s unanimous vote is a monumental step, the journey is far from over. The bill must now pass the House of Representatives and be signed into law by the President.
- Urgency of House Passage: The epilepsy community, led by organizations like Epilepsy Alliance America, faces the critical task of mobilizing support in the House to ensure the bill passes before the end of the current congressional term. This will require sustained advocacy, engagement with House members, and public awareness campaigns.
- Long-term Implementation and Oversight: Even after enactment, the work will continue. The success of the National Plan will depend on diligent implementation by federal agencies, robust oversight by Congress, and continued engagement from the epilepsy community to ensure that the plan’s objectives are met and that it adapts to evolving needs and scientific advancements.
- Call to Action: The momentum generated by the Senate’s decision is a powerful force, but it needs to be channeled effectively. Epilepsy Alliance America’s call to action for individuals to contact their U.S. Representatives is a crucial component of ensuring the bill’s ultimate success, transforming a legislative milestone into a tangible reality for millions.
The National Plan for Epilepsy Act represents not just a bill, but a promise – a promise of a future where epilepsy is better understood, better treated, and where individuals living with the condition can thrive without the debilitating barriers they currently face. Its enactment would signify a profound commitment from the U.S. government to a community that has long fought for recognition and comprehensive support.
Take Action
Momentum is building, but our work is not finished.
Epilepsy Alliance America encourages everyone in the epilepsy community to contact their U.S. Representative and ask them to cosponsor and support the National Plan for Epilepsy Act.
Take action today: Ask your U.S. Representative to support the National Plan for Epilepsy Act.
